Access to Orkambi

Debate between Lady Hermon and Ivan Lewis

Tuesday 17th July 2018 Commons Chamber

[Lady Hermon (North Down) (Ind)]

Will the hon. Gentleman give way?

[Mr Lewis]

I am going to make progress, if I may, but I will perhaps give way once more later on.

--- Later in debate ---

[Mr Lewis]

I agree entirely with my hon. Friend, and I will develop his argument as I continue my speech.

A quote from Emma, Alex’s mum, sums up many of the frustrations of the constituents represented here today. She says, very movingly:

“Alex has a real love for life and all she wants to do is live a long and happy live without having to fight to breathe.”

That powerful statement says it all.

Since March, when we last debated this issue, NHS England and Vertex have met on four occasions. I welcome the fact that, during those negotiations, NHS England accepted the principle of a funding agreement that supports a portfolio approach to current and future drugs. That is undoubtedly a step forward and a positive response to the contributions parliamentarians made in the initial debate, but it is clear that these negotiations have not produced an agreement that is acceptable to both parties. Indeed, the public recrimination suggests that the negotiations had all but broken down. It remains to be seen whether NHS England’s written offer, made on the eve of this debate, is a basis for progress, but the early indications are not encouraging.

It would be inappropriate for anyone to make judgments about the validity of either party’s case without having full access to the information, which remains confidential for reasons of commercial sensitivity. I know I speak for all parliamentarians when I express concern about the fact that, as my hon. Friend the Member for Dudley North said, NHS England described its offer as “final”. It could lead to a stalemate that once again lets down patients and their families. To be clear, I respect the need for an objective process that delivers appropriate medication and value for money for the taxpayer. If NICE did not exist, it would have to be invented, but—this point has been made time and again tonight—the shortcomings of the current assessment processes are well documented. That is why NHS England’s involvement in this instance is to be welcomed.

Equally, Vertex has the right to seek financial remuneration at a level that maintains its viability and supports the development of the company. Sadly, I am unconvinced that more of the same will lead to an agreement that will enable Orkambi and successor drugs to be made available to people with cystic fibrosis. Consequently—my hon. Friend the Member for Bury North suggested this—I urge the Secretary of State for Health and Social Care to facilitate an urgent meeting with the chief executive officers of NHS England and Vertex. In that meeting, they should seek to resolve any outstanding differences, and agree a rapid timescale for the roll-out of Orkambi across the country and an approach for other relevant drugs. People with cystic fibrosis have been waiting far too long.

[Lady Hermon]

The hon. Gentleman is well aware that health is a devolved matter in Northern Ireland, but we do not have a Health Minister because we have not had a functioning Assembly for 18 months. Will he join me in urging the Minister to liaise with the permanent secretary in the Department of Health in Northern Ireland to reassure the many cystic fibrosis suffers and their families, who are desperately anxious, that we have a drug available? The health service must enter into final discussions to reach the outcome we all want.

[Mr Lewis]

I agree entirely. The absence of a functioning Executive is a source of continued regret to those of us how care passionately about Northern Ireland. Progress has been made, but there is now a stalemate. It is incredibly important that, in the absence of an Executive, Ministers ensure that any solution that is reached also benefits people with cystic fibrosis in Northern Ireland.

The UK Government need to commit to a proactive role to help secure a deal as soon as possible that will ensure access to these new treatments. They must fulfil their own stated ambition for NHS patients to be

“among the first in the world to get life-changing treatments.”

Vertex, the pharmaceutical company, must be fair and responsible with pricing to ensure that a deal on access to new treatments can be agreed—and agreed rapidly. The Government must consider looking towards the future pipeline of treatments for cystic fibrosis to ensure that a robust and fair system is in place for appraising high-cost new medicines to avoid similar issues about access to medicines with other companies and drugs in the future. The time for words is over; on behalf of our constituents, tonight we demand action.

Stormont

Debate between Lady Hermon and Ivan Lewis

Monday 12th October 2015 Commons Chamber

[Mr Ivan Lewis (Bury South) (Lab)]

I congratulate the hon. Member for South Antrim (Danny Kinahan) and the Chair of the Northern Ireland Committee, the hon. Member for Tewkesbury (Mr Robertson), on securing the debate. This is my first speech as a Back Bencher for more than 14 years, so I hope that hon. Members will forgive me if I am a little rusty. I never sought the role of shadow Secretary of State, but it turned out to be an immense privilege and left me with a deep affection for Northern Ireland. That affection is built on the straight talking and warmth encapsulated as “the craic” among so many people I met.

I feel a great sense of pride but also responsibility as a consequence of my party’s legacy in helping to bring peace to Northern Ireland. Whatever the collective political failures of recent years, it is important to recognise that many of Northern Ireland’s leading politicians would hold their own intellectually and administratively at the highest levels in any democracy.

I want to take this opportunity to welcome back my friend and colleague, my hon. Friend the Member for Gedling (Vernon Coaker)—who is not in his place at the moment—as shadow Secretary of State. He is widely trusted and respected in Northern Ireland. I also want to take this opportunity to thank my hon. Friend the Member for Ealing North (Stephen Pound) for his tremendous support during my period in the role. I strongly support both of them in maintaining Labour’s support for a bipartisan approach. The principle of consent must apply to any change to Northern Ireland’s status within the UK. It is also important that my party should maintain equidistance between Northern Ireland’s mainstream parties.

So, what are the causes of the culture of crisis that has led to a cycle of despair and, in turn, to public disillusionment with the political system? There are a number of factors involved. Three successive years of elections have meant that politicians are reluctant to make compromises that might affect their core support. Sinn Féin’s overriding political priority has been to make progress in the south and to do nothing in the north to undermine its anti-cuts, anti-austerity position. Also, post-Ian Paisley senior, the Democratic Unionist party has been wary of being seen to work in an authentic partnership with Sinn Féin. An accommodation is not a partnership. Furthermore, too many people are still trapped in worklessness and inter-generational poverty and not seeing their lives getting better via a peace dividend.

What might the solutions be? The Stormont House and Stormont Castle agreements must form the basis of a way forward. There has to be a viable budget that takes account of agreement on some measures to mitigate the impact of welfare changes, including non- implementation of the pernicious bedroom tax, but Sinn Féin has to accept that such a viable budget is a reality facing all democratic Governments. This will require tough choices including changes to the welfare system. The only case I can see for further additional UK Government finance is a new fund to support the development of a new universal mental health service to tackle the inter-generational trauma unique to Northern Ireland. There also has to be a plan, with measurable timelines, to oversee the disbanding of all paramilitary structures. Such structures should be anathema in today’s Northern Ireland. The structures to deal with the past need to be agreed as soon as possible, and the Government should honour the Good Friday agreement commitment to a public inquiry into the Finucane murder. This can and should be time-limited, with a finite budget.

An incoming 2016 Executive, and, where appropriate, the UK Government, should commit to the implementation of the excellent Heenan-Anderson Commission recommendations to systematically tackle worklessness and inter-generational poverty. Alongside that, we need an economic plan that includes a city deal, and investment in skills and infrastructure, essential if the devolution of corporation tax is to make a real difference. It is right that there should be the establishment of an official recognised Opposition, preferably from 2016 onwards, but we also need a new movement binding together civil society, business, trades unions and the Church to apply pressure to politicians and to create the space and permission for politicians with courage and vision.

Seventeen years on from the end of the troubles Northern Ireland is a much better place, but it is still a society emerging from conflict, coping with the wounds of its past. In truth, that means it will take at least a generation, perhaps two, to move from a cold to a lukewarm peace and then to a normal society. What is needed more than ever is courageous political leadership, coupled with a shared and ambitious vision for prosperity and social justice.

[Lady Hermon]

I just want to pay tribute to the hon. Gentleman, who worked extremely hard as the shadow Northern Ireland spokesman for a considerable time. I am curious to know whether his experience and expertise on Northern Ireland have at any stage been asked for by the current leader of his party. I think his plea tonight was almost for his party leader to read what he was saying about Northern Ireland. Has his party leader ever sought his view?

[Mr Lewis]

I thank the hon. Lady for her generous comments, and I thank all Northern Ireland politicians represented in this House for the tremendous support they gave me during the time I did that job. They do not get enough credit for the many constructive and positive things they do to try to move Northern Ireland forward. In direct answer to her question, I can say that in the context of the reshuffle I did have a brief conversation with the leader of my party about the challenges facing Northern Ireland. When I meet the leader of the Labour party in the next few weeks on a one-to-one basis I will certainly be raising a number of issues with him, one of which will be my analysis and my view of the appropriate position that my party needs to take if we are to continue to adopt, along with the Government, a constructive bipartisan approach to moving Northern Ireland forward. There are many things we could do that may undermine that, and we must resist the temptation to change our long-established positions, which have, despite some disagreements, on the whole earned the respect of all of Northern Ireland’s political parties. I am delighted that my hon. Friend the Member for Ealing North, the shadow Minister of State, has insisted that we stay true to those positions. On that note, I will bring my remarks to a conclusion.

Northern Ireland (Miscellaneous Provisions) Bill

Debate between Lady Hermon and Ivan Lewis

Monday 18th November 2013 Commons Chamber

[Mr Lewis]

I agree with the hon. Lady. I know from my attendance at the SDLP conference only a couple of weeks ago of the high affection and respect in which Eddie McGrady was held by the party, too. He will be a great loss to all who knew him.

[Lady Hermon]

I would not like this opportunity to pass without saying that when I was first elected in 2001, I was then an Ulster Unionist, and Eddie McGrady was a marvellous friend. At the end of a lengthy debate, he and his then colleague Seamus Mallon—both brilliant parliamentarians and very fine gentlemen indeed—would often ask me to join them for supper. It was a spontaneous act of kindness, which was the mark of the man. At Eddie McGrady’s requiem mass in Downpatrick on Thursday, there really was standing room only, which was a tribute from right across the board and the political spectrum in Northern Ireland. We wanted to pay tribute, because rarely do we see that kind of parliamentarian and politician in Northern Ireland. He was of the old school and a gentleman in every sense.

[Mr Lewis]

I hope that the sincere words that have been uttered in all parts of the House will be some comfort to Eddie McGrady’s family and friends at this difficult time. Indeed, perhaps we can ensure that those words are relayed to them from this House.

If I may make some progress, let me again condemn in the strongest possible terms the petrol bomb attack on the Alliance party office in east Belfast over the weekend. All Members of this House will want to express their support and concern for the hon. Member for Belfast East (Naomi Long), the Alliance MLAs and their staff. A first principle of any democracy is that elected representatives should be able to speak and vote free of intimidation or the fear of violence. That is why, irrespective of political differences, we should take every opportunity to express our solidarity with the hon. Lady, who frankly has suffered intolerable attacks in recent times. It is not good enough for politicians, either in Westminster or Stormont, to remain silent in the face of such an affront to democracy. They should turn up the volume in making it clear that such intimidation and violence are entirely unacceptable and can never be justified. It is also essential that the Police Service of Northern Ireland continues to do all in its power to prevent such attacks and bring those responsible to justice.

--- Later in debate ---

[Mr Lewis]

Thank you, Madam Deputy Speaker. I have a long track record of obeying your instructions in a variety of contexts, and shall do so again.

Dealing specifically with new clause 3, I ask the Minister to look sympathetically at the proposal that the Secretary of State should provide an annual report to the House on the work of the various organisations that deal with the past. As the current Haass talks highlight, dealing with the past in a serious and meaningful way is essential if the people of Northern Ireland are to make progress on building a shared future. While it is right that dealing with any processes relating to the past are led by the Northern Ireland Executive, there must be full and consistent engagement by the UK and Republic of Ireland Governments both because of their central role in the troubles and because likely solutions will require their active participation and their legislative and financial support.

Although we broadly support the Bill, as I said at the beginning of my contribution, it is somewhat disappointing in its lack of ambition. It fails to do anything that will support economic growth or create opportunities for young people, which in my view are the greatest challenges Northern Ireland faces. While those issues are primarily the responsibility of the Northern Ireland Executive, the UK Government have a key role to play.

As the Minister will be aware, unemployment in Northern Ireland remains above the UK average, with almost one in four young people out of work. Too many communities are struggling with the corrosive cycle of poor educational attainment, worklessness and inter-generational deprivation. That is on top of a cost of living crisis in which prices are rising and wages are falling.

In conclusion, the Bill is necessary and, broadly speaking, deserves the support of the House. However, there are far bigger issues facing Northern Ireland that require the full engagement of the Government working with the Irish Government to support the Northern Ireland Executive. I hope this Government will start to show the leadership that is so essential at this crucial time for peace and stability in Northern Ireland.

[Lady Hermon]

I am grateful to the hon. Gentleman for giving way to me a second time. Before he concludes, would he address some of the criticisms made by the hon. Member for Foyle (Mark Durkan) for whom, I repeat, I have enormous regard, even though I have not agreed with half of what he has said this evening? While the hon. Member for Bury South (Mr Lewis) is considering new clauses 1 to 3, would he particularly address the hon. Gentleman’s criticisms of the Historical Enquiries Team?

[Mr Lewis]

At Madam Deputy Speaker’s urging, I was bringing my remarks to a conclusion, but I will address the specific point that the hon. Lady mentions. We will deal with the issue in our response to Ambassador Haass, which the hon. Lady asked me to put in the public domain; we shall do so in the next few days. My view is that, on the whole and in many cases, the work of the Historical Enquiries Team has been effective and has delivered some level of justice to victims. I think we should applaud that and draw attention to it at every opportunity. However, some serious and legitimate concerns have been raised about elements of the HET’s work, which must be seriously considered. There are also questions about the criteria applied to the investigations, the independence of the HET, its capacity to do its job, and the HET’s ability to carry out its functions given the limited resources available to the PSNI.

Haass therefore provides an important opportunity not only to review and recognise the successes of the HET, but to reflect in the context of any new framework that is developed on some of the weaknesses and to try to put them right. We need a balanced and a measured approach to the HET. In speaking to victims, it has brought truth to a number of them—there is no question about that—but we know that independent evaluation has raised some serious and legitimate concerns. In the role that Ambassador Haass is fulfilling in the all-party talks, it is very important to get the balance right. Options would include a reformed HET or a replacement body to build on the successes of the HET, but there must be some structure to deliver truth and justice for the victims of violence in Northern Ireland. We need a balanced and sensible view of the HET’s successes, reform of the HET and of any future replacement body.

Northern Ireland

Debate between Lady Hermon and Ivan Lewis

Wednesday 23rd October 2013 Commons Chamber

[Mr Lewis]

After 14 days in my post, I can say that any violence, from whatever source, is to be condemned unequivocally. I would regard anyone who is a victim of violence, intimidation or terror as a victim. If we want to get into a detailed debate about this, I would want some more time in my post so that I can carry out further work and engagement—I have tried to respond as much as I can to my hon. Friend. A big and important part of my job is to spend time with victims and their families to get a sense of how they feel and what the definition of justice means to them. In different circumstances, there can be a different response, so we need to be sensitive to that fact.

A second important principle is that any process must recognise that significant progress can be made without trying to achieve a shared narrative about the past, as achieving such a narrative would be an unrealistic expectation. What is of paramount importance is that nationalists and Unionists learn to respect the equal status and legitimacy of their fellow citizens now and in the future.

The third principle is that while it is, of course, right to consider all options about addressing responsibility and accountability for past wrongdoing, it is also important to say that any process must recognise the rights and responsibilities defined by the European convention on human rights. The convention is clear. It stresses the importance of ensuring justice, truth and reparation in response to violation and abuses, which would require a deep and sensitive understanding of what that would mean for the wishes and expectations of victims and their families.

I have always believed that the public expect politicians, on the whole, to focus primarily on change and the future. However, it is clear that part of securing a better future for Northern Ireland requires us to deal with the unresolved issues of the past, which is why the Haass talks are so important and cannot be allowed either to fail, or to arrive at superficial solutions. Haass has the potential to achieve meaningful transformational change if all political parties, and the UK and Irish Governments, show leadership and seek common ground in the interests of all people of Northern Ireland.

[Lady Hermon]

Will the hon. Gentleman confirm that he, his party leader and his party will make a submission to the Haass talks, albeit he has been in his post for only a short period? Will he kindly publish any such submission so that rest of us can be au fait with the requirements of the Labour party?

[Mr Lewis]

I am delighted to give the hon. Lady that assurance. I will be meeting Richard Haass next week, or the week after, and we will certainly make any written representations public and ensure that hon. Members are aware of our position.

Just as it would be wrong to minimise the importance of the past, it would be equally mistaken to suggest that that, in itself, is Northern Ireland’s biggest challenge. The greatest challenge is the corrosive cycle of poor educational attainment, worklessness and intergenerational deprivation that continues to afflict far too many families and communities in Northern Ireland. That lethal cocktail has the potential to be the breeding ground for extremists, and for perpetual conflict and instability. Although those issues are primarily the responsibility of the Northern Ireland Executive, the UK Government have a key role to play in pursuing an active industrial strategy to generate jobs and growth, while reflecting on the negative impact that pernicious policies such as the bedroom tax have on the most vulnerable and also would have on Northern Ireland’s block grant.

This year’s disturbances should teach us a number of lessons, one of which is undoubtedly that unfinished business remains in relation to the past. However, we must also reflect on the impact of social and economic inequality, which cannot be allowed to prevail if peace in Northern Ireland is to move from a political accommodation to a society built on genuine reconciliation and mutual respect.